Welcome Friends!
Melissa B.
Birth Date - October 30, 2001
Main Diagnosis - Mitochondrial Myopathy
THEME: Puppies & Kittens (Realistic)
"THANK YOU"
We continue to just be so “in awe” of the quilts. The girls love showing them off to anyone and everyone who comes over. They are so, so special.
Thank you for bringing so much cheer into our family.
Biography
Melissa was born on October 30, 2001, after a very uneventful and
healthy pregnancy. As the third girl, she adored her older sisters, and was
reaching all her milestones ahead of schedule, always trying to keep up with
them.
As a baby, she had her fair share of common childhood infections – ear
infections and the like. She had several incidents of being sick enough to be
hospitalized for fluids, but in between times, things seemed pretty normal.
Around the age of three, she began to complain of headaches on an almost daily
basis. She also had repeated throat and upper respiratory infections, and would
get croup very easily. During this time, she had a span of nearly two years of
not growing, and the doctors recommended removing her tonsils and adenoids,
which seemed to bring some immediate relief.
By age four, the headache complaints were severe enough to warrant further
investigation. After a Neurology visit and a brain MRI, we were left with a
diagnosis of severe sinus disease. The ENT scheduled what would be the first of
three sinus surgeries that Melissa would need. She had some immune testing done,
to pinpoint a cause for the chronic infections. They found some low levels, but
decided to just keep an eye on it and see how she did. Surgically draining her
sinuses brought some relief, but it was rather short lived. She kept getting
infections, and cultures were growing out resistant bacteria strains. It seemed
as if she caught every germ that passed by, and she was constantly sick with
something or another, if not sinuses, then bronchitis, or strep, or a stomach
bug.
It was during this time of constant coughing and headaches that we were referred
to Pulmonology. Putting all the symptoms together, he wondered if she perhaps
had a problem with sleep apnea, (even though her tonsils were already gone), so
he ordered up her first sleep study. We were shocked at the results! Melissa had
significant apnea and hypopnea (Breathing too shallow) episodes the entire time
that she was asleep. Melissa was started on bi-pap immediately, and we noticed a
big difference in her fatigue levels right away. Though she still got easily
fatigued, she had a lot more energy for daily activities, and no longer woke up
with a headache and exhausted.
Melissa was being treated for reflux, asthma, sleep apnea, and migraines. She
was still having a good amount of muscular pain, fatigue, poor endurance, and
stomach pain. She was having some episodes of staring and not responding which I
described to her Neurologist. The Neuro remarked that it sounded like seizures,
and ordered an EEG. It came back abnormal showing Focal seizures. I had no idea
that seizures could look like that and we were quite shocked by the results. So
we added seizure meds to the daily regimen.
During this time, Melissa’s two sisters, Kelly and Laura, were being worked up
for Mitochondrial Disease (Mito). As we learned more and more about Mito, and
answered the endless list of questions about siblings and family members that
Genetics and Mito doctors ask, the question arose whether Melissa was also
dealing with Mito. Melissa had testing done that showed significant
abnormalities, and she also received a Mito diagnosis.
Mitochondrial Disease is a disease of energy deficiency. The mitochondria are
the building blocks of the cells, present in every cell in our body. They are
responsible for converting food and oxygen into energy. When they don’t work
properly, the cells cannot produce enough energy to support major organs or
muscle groups, and those organs and muscles then begin to fail. Mito can affect
any organ, and different people can be affected in different ways. It is a
progressive disease that has no cure. We learned that the same form of Mito can
even have different symptoms among affected family members.
While Melissa does not have the dietary challenges that her sisters do, she has
many significant struggles that are uniquely hers. She is the only one of the
three that has seizures. She has had a difficult time dealing with repeated
infections. Her immune system is dysfunctional, and she receives IViG (immune
replacement) every month to help it function more effectively. When her body is
sick or stressed, it seems to lower her seizure threshold, and it is during
those times that she has had Grand Mal seizures. She takes her “Mito Cocktail”
along with a bunch of other medications daily. For half the year, she is on
prophylactic antibiotics to try to keep the infections away. Most days she
handles everything really well. We all work through the hard days together.
Melissa is in fourth grade, and especially enjoys history, science, and grammar.
She likes to read, and she is very creative, and loves to do arts and crafts
projects. Melissa is an animal lover, and likes to read books about animals, as
well as visit them. We don’t have any pets in the house due to allergies, but
Melissa does enjoy visiting them at family and friends’ houses. She is
completely devoted to her American Girl doll and enjoys dressing her up and
taking her everywhere. Melissa also enjoys Littlest Pet Shop and Polly Pockets.
She is so full of life, and stirs up excitement all the time. Her middle name is
“Joy” and she definitely brings joy to all of us!
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
